Cardiovascular Connective Tissue Disorders Patient Stories

Isaac was born with Marfan syndrome, a connective tissue disorder that is associated with cardiovascular risks. He is the third generation in his family with this disease; his father and grandfather were also born with it. As Isaac grew older, he began presenting signs of a weakening heart and at age six, he began a complex series of heart surgeries to repair his organ.

Dr. Hanley, who led a marathon, eight-hour surgery reconstructing the pulmonary artery and its branches to Jordan’s heart, is known for tackling some of the world’s toughest and most complex pediatric heart surgeries. For Jordan, this meant correcting his narrowed pulmonary artery and all of its branches.

Julie Gutierrez found the man she says saved her son’s life, cardiologist Tom Collins, MD, the way hundreds of families have: a desperate web search led to a recommendation from an online support group. Julie’s son, Anthony, was born with Williams syndrome, a rare chromosomal disorder that causes severe heart defects, among other problems. After months of treatments and hospitalizations, she’d just been told that Anthony wouldn’t live past his first birthday.